help me please

[julianna]

Please someone help me because i am feeling very alone right now and angry and scared that the wrond decision will be made! This might be a little long so forgive me:( I have had frequency since I was a little girl. 20-30 times a day and about 8 times a night. In movies..I am up 4 times and forget car rides. I never had pain until last year and I went to a doc that did a hydro and said he saw indications of IC. The procedure helped me to be pain free (the frequency continued though)for a year and than BOOB the pain came back and this time it has been 24 hour for 5 months of agony. I had a hydro that didint help and instillations that seemed to make it worse. I cannot take Elmoron or narcotics because of allergies and the Elavil makes me retain horribly! My doctor doesnt believe me anymore because he says that I am the only one that has this much pain and the instillations have helped everyone. He now thinks I have an eating disorder because I weigh only 92 pounds and I tell him I am afraid to eat certain foods but he doesnt believe that diet plays a part in this! the HORRIBLE thing is ..my family now agrees with him(my husband and parents) and last night they came to me and told me they were checking me into an eating disorder clinic where they have therapy that can help me ! It was a horrible scene while I was trying to tell them that I was in pain and it isnt in my head and well u guys know the drill with these doctors. When they cant help or figure stuff out---its a head problem.my bladder aches when it fills up ,I burn,food DOES kill me-especially bananas,I pee all the timeIt feels like I still have pee in me when Im done,the pain feels like someone took a bat and beat my bladder...symptoms of IC--not an eating disorder! Please maybe if some of u write and tell about docs not believing u than I can show them that they are wrong and it wont be a bad mistake for me.......

[jrowley]

So sorry your having such a problem with your doc and family but another suggestion is to go the patient handbook (http://www.ic-network.com/handbook/) and print off the information there that you can print off and show your doc. And I would also say look around for a new uro that is more familar with IC. There are some out there you just got to look for them. A good place to look in your area is through webmd. You can to there through my link at the bottom of this message. When you find some docs be forward and ask them if they are familar with IC, if not then move on to the next one.

Sorry it has to be so bad for you everyone here knows your pain with no one believing in you.

In the handbook you will also find foods that are good for IC'ers to eat maybe then you can eat and show your family that you don't have a eating disorder. That's horrible that they think like that. Oh and don't forget to show them the aspects of IC too.

Good luck to you. If you need help finding a doc you can email me.

[kelly McC]

Hello,

I would have them read the handbook.http://www.ic-network.com/handbook/
It is NOT in your head. I had many way to many tell me they may never find whats wrong with me or it was in my head.I was diagnosed 3 years later. By hyro/cysto. I do instills which help me sometimes with frequency but not pain. Are you able to get a second opinion ? The diet has helped me not cured me but does help. I am sorry and hope your able to help your family understand.
huggs,
Kelly

[Thoney]

Julianna and family,

I'm so sorry you are having such a hard time. My heart goes out to you and understand what you are going through. I am on my 3rd URO, but primary is great. My Mom is very supportive, my father is not. My boyfriend tries very hard to be supportive, but misses the girlfriend he use to know.

Doctors are wrong all the time, that's why they call it "Practicing Medicine". I have had DMSO and other kind's of instillations and they do not work with me either, they actually make the pain worse for me. They do, however, work for some people. There is still so much unknown about IC and the treatments for IC. Some treatments work for some and not for others. My suggestions to you, it to have your husband and family read as much information as possible that you can get to them. Have them go to this network and read the "Patient Handbook" and posts from all of us, so maybe they can better understand. And, most importantly, find a new Doctor!!

Could you have an eating disorder? It's nothing to be ashamed of if you do. I only say this because eating disorders can be very dangerous and should'nt be overlooked. Diet plays a HUGE part in IC and is proven that it does. That's why every single kind of literature you find on IC, there is most always a special diet that is discussed.

I am in pain 24/7 and have been for 5 months. The pain is horrible. I can't sleep (as you can see by the time of day it is), All I can eat is cold cereal (Special K), yogart, chicken, fish, rice and only white bread. I lay on my heating pad most of the time, when I'm not pacing. I have no social life.
All your family needs to do is read posts in this network and they will see that there are hundreds of us out there like you.

I hope this helps a little and hang in there we are here for you!!! If you need to talk you can always send me a PM. :kissing: :grouphug: :angel:

[julianna]

thank u for your replys and please keep them coming if u dont mind because having people believe u makes me stronger:) To answer a question---no I do not have an eating disorder..I have always eaten anything and everything I wanted and luckily stayed small. I just think it is a stigma that people have and the same goes for heavy people as well:(

[ICNDonna]

One thing you might try, in addition to the above suggestions, is to consult with a dietitian about your diet. Sometimes it's difficult to get adequate nutrition on an IC diet --- and it can be extremely important to our health. You might also go to the ICN Shop and order a copy of "A Taste Of The Good Life." Written by an IC patient, it gives a lot of good information about the IC diet. This could be very important information to share with your family as well.

Donna

[Babs RN]

Trying to get families to understand the illness and its individualized treatments is no fun--I am finally turning the corner on having multiple people realize that I am not a drug addict, looking for extra attention, or trying to starve myself. While I am nowhere near your weight(lots more)I still get nailed on the try to starve myself idea because of the IC and that I am trying to lose weight the wrong way. I finally convinced them that when the pain is out of control, I get nauseated and lose my appetite. Things have improved with the pain meds but my meddling mother in law finally acknowledged that there is an absolute difference between me with pain control and without. This from a lady who won't take anything besides Claritin and Advil. Of course, there has to be another medical person in the family besides me who hasn't worked as a nurse in 20+ years who they run to verify what I tell them about IC and of course she doesn't know anything about IC. I had the family members with computers look up this website and the ones who didn't got it in the mail. Please feel free to PM or email me if you need to vent. Of course any of us would be glad to help you in anyway.

Hugs :grouphug: ,
Barb

[Amyinagony]

I am one that gets nauseated, sick and lose my appetite too with pain. I even throw up with severe pain. So I know exactly what that is like. I lost 20lbs in one month because I was in so much pain that I'd either throw up or just couldn't eat due to the nausea.
As for people believing you, that is a tough one, and I think one that we all have had to deal with. It's sad. I agree with showing them literature and books on what IC is. That may help. Also show them the stuff on this message board.
Please know that you always have very understanding, supporting and loving people here. :grouphug: :kissing:
Good luck, I wish you the best.

[mom_in_ma]

Wishing you luck and support with your family. I know it's hard to eat when you are in pain and afraid of the affects of certain foods. When the IC first started for me I lost 15 lbs in a month...betwee the depression, pain, dry mouth from the meds, etc.

[portiapoodle]

Julianna

In plain English your urologist sounds like mine, a PRICK but I had to say it. I am getting my results Wednesday and finding a third one.

But I have some advice. Being the creep uro would not give me anything for pain I went to a FEMALE pain management doctor and and she came up with muscle relaxers, pain meds and anti-inflammatories. I am far from being fine but it has been working a little better every day

I strongle recomend pain management

Your friend,
Mary

[ti_fanny]

I'm sorry to hear about your experience with your doctor. I have the same problem. I have had IC since my son was born which was 12 years ago. My first uro was great and he is the one that diagnosed me with IC. that Dr and his nurse were GREAT. Well then he had to move to another clinic, so then I started seeing the uro that replaced him. Well this doctor I have had for about 8 years has no clue about IC and neither does his nurse. I lost my insurance in 2000 when I got divorced so I haven't seen my uro but twice since then. I call in every month to get refills on my perscriptions. It hasn't been a problem for about a year and a half well now the nurse that works for my doctor reaquested that I go and see a doctor that studies in this. Well that's nice to know after seeing him for 8 years. She said my doctor really focuses on prostate and male problem's. So know without insurance I'm trying to find a new doctor. Hang in there. I have had this for 12 years and still have not found one that understands IC. I have always been tiny. I'm 29 years old and my weight is 102. I have already seen a dietician and they said I need to start eating more. But I have never been a big eater, I eat a good dinner and sometimes a snack during the day. My Stomach has shrunk from me eating like this for almost my whole life. If these doctors could only feel the pain we are going threw they would understand.
Tanya
Please PM me if you would like to talk more.

[Amyinagony]

[QUOTE=] ti_fanny She said my doctor really focuses on prostate and male problem's. [QUOTE]

I learned that very same thing. In my experience, 10 out of the 11 uro's I saw were like that. Their main focus was male urology/prostate problems. The one out of the 11 (just happened to be female) was the one to diagnose me. (unfortunately, she left the area, leaving me to go on the doc hunt again) I know that there are several good male Urologist that do know IC, I was just one of the unlucky ones. I even mentioned in one of my posts that one Urologist I had, knew of IC, but didn't want to get involved with trying to treat it. Said it's too complicated. (makes me think that he didn't really know enough. jmo) But that's ok, I have the doctor I need.
Keep searching. There is help out there. Good luck.

[lilylane]

Amy,
Hang in there. Read about the foods that are safe, then pig out on them in front of your family to show them you aren't making it up. I realize you probably don't feel like eating because of all the anxiety this is causing you. I HIGHLY recommend taking a light does of XANAX and pyridium, it will relax your bladder and possibly help you to regain your appetite. Eat lots of potatoes, steak and vegetables, breads and butter!!! Show them the handbook and get a new doctor. You need support, and your doctor needs to go back to school. Send your doctor some information on IC. Its a shame he dismissed you. My family doctore never even heard of IC. Thank God I found an IC specialist in Morgantown.
good luck sweetie. we've all been there trust me!
xoxo
lily

[donutgirl]

I am soooo sorry you do not have a good support system to turn to. This disease is bad enough w/o having to try and explain yourself to your family. I suggest you read the posting by MayRay under patient stories. Her family did not believe her and had her institutionalized for a period of time. Please print this story out and show it to your family. Keep searching for the right physician....one that is knowledgeable about IC and will treat you w/ care and concern.

Please keep in touch here on the boards. WE CARE!!!

Hugs,
DIANE

[mayray518]

Thats right. Please get in touch with me julianna. sunlover518@aol.com. I went through the same thing you did. I was eating as usual and got down to 95 lbs because of the stress. They accused me of being bulimic at the hospital because I went to the bathroom so much and locked my bathroom door and would only let me use it twice a day. This is when the IC was at its worst. Please read my story and show it to your family. And also to THoney I am a small woman to begin with 5 2 and 105 lbs. Getting down to 95 lbs may seem anorexic to a lot of you but most of you probably dont weigh 105 and probably lost weight yourselves at the beginning of the IC diagnosis. In fact, I have had a number of women tell me that the only good thing about IC is that they lost weight in the beginning. It is normal to lose weight when one is going through stress. I was eating as usual and continued to drop weight because of the stress. I was never ANOREXIC. It was no different than someone who has cancer and loses weight. The weight came off because of the illness; in fact I was eating more than ever trying to get my weight back up and it took a long time. You cant accuse someone of an eating disorder just because they have a low weight to begin with.

[Thoney]

Please forgive me if I insulted anyone inregards to asking if Julianna could have an eating disorder, it most definitely was not my intention. I am a recovering Bulimic and just did not want to dismiss the possibility, so my comment was only from caring and concern. I can only imagine what it would be like to be an already small person and losing weight without any control from being ill and in pain. I happen to be a "full figure" girl :) and if I don't get some sort of exercise, diet or no diet, the flab attaches to me like I'm a flab magnet...I could only wish that IC effected me the way it does you, but then I would be able to find a positive from this whole experience...Go figure, the small people would probably like some added meat to the bones and I would like less...Can there be any consistancie to these horrible disease???? :headbang:

Hang in there Julianna!! The suggestions from everyone should help some, I hope....INFORMATION, INFORMATION, INFORMATION...that is the key! :grouphug:

Again, I apologize, I didn't mean to upset anyone. :love:

[mayray518]

No apologizes needed. I am 5 2 and 105 is a perfect weight for me. anything over doesnt look good and anything under doesnt either. Now a 110 lb 5 10 model is another story. I was merely pointing out that when you are small and lose 10 lbs you are down to the 90s and most people cant comprehend this. I maintain my weight by watching what I eat and exercising but have never been anorexic or bulimic.